Long term conditions framework: consultation analysis

11. Question 9

What should we know about the challenges of managing one or more long term conditions?

Introduction

The vast majority (87%) of respondents answered Question 9, and the analysis covers two broad areas, including:

• the challenges for people managing long term conditions
• the challenges for healthcare providers who support people managing long term conditions and the healthcare system

Organisations highlighted the context of an increasing number of people presenting with, or living with multiple long term conditions, and the complexities and challenges that arises from this – from diagnosis and symptom management, as well as from a treatment, care, and support perspective.

The challenges for people managing long term conditions

Themes which emerged from consultation responses included:

• theme 1: emotional and mental health challenges
• theme 2: accessing and managing complex treatment, care, and support
• theme 3: financial burden for people with long term conditions

Theme 1: Emotional and mental health challenges

Many respondents, particularly individuals and third sector organisations, reported that people managing one or more long term conditions were at greater risk of poor mental health and wellbeing (for example, depression, anxiety, stress), especially those with multiple conditions. Specific conditions such as diabetes, heart conditions and multiple sclerosis were noted as carrying increased risks.

Respondents described the ‘emotional toll’ of symptom management, flare-ups and long waits and delays in accessing NHS treatment, care and specialist support. These issues often worsened the mental health and wellbeing of people managing one or more long term conditions.

Individual respondents highlighted the unpredictability of their conditions, the fatigue and burnout of attending multiple appointments and repeating their medical history to different practitioners which often resulted in a lengthy recovery time for them personally. They emphasised the importance of accessing the right support at the right time to help them manage their condition and health better.

Further, respondents said that people managing one or more long term conditions could often be socially isolated or have feelings of loneliness – for example, these responses mentioned issues relating to pain, reduced mobility, limited social participation, inability or lack of willingness to leave home and impact on employment.

Respondents also highlighted the interaction between mental and physical health in managing one or more long term conditions as a particular challenge, emphasising the need for accessing timely support for both their mental and physical health.

A respondent quote which illustrates points raised is presented below.

“It's exhausting. It's like a full-time job, but one where you have no power, no resources, no training, and no supportive colleagues. It's like telling the same story again and again and again to people who it turns out aren't the right folk to help you, so you end up being passed like a parcel to someone else. And starting all over again.” Individual respondent

Theme 2: Accessing and managing complex treatment, care, and support

Many individual and organisation respondents highlighted the challenges people managing one or more long term conditions faced when accessing treatment, care, and support. They also said there were particular challenges for certain groups of people with long term conditions (for example, people who lived on their own, or in rural or island areas). Challenges included:

• barriers to accessing care and support – this spanned: socio-economic challenges; advocacy needs; the location of services; the time taken to travel to and from appointments; and the availability of services
• navigating the healthcare system – respondents mentioned a lack of awareness among people managing one or more long term conditions of the clinical and non-clinical services available that could help with the management of their conditions, and/or on how to access them, particularly for certain groups such as disabled people
• lack of specialist care support – respondents reported long waiting lists that meant they turned to private healthcare to access the specialist support they needed but recognised that this was not feasible or possible for everyone
• support and services could be too siloed and specific to one condition – respondents highlighted that this results in challenges such as people with long term conditions having to deal with different clinicians and specialists, the need to access different services or attend different appointments for each condition, and the extent to which everyone involved in the person’s care worked together and shared information about their health, treatment, and care
• keeping track of, and managing, multiple medications (polypharmacy) including taking medication which contradicts one another, risks of incorrect drug usage and taking medication at the wrong times
• receiving conflicting or contradictory information and advice – often as a result of various health professionals being involved in their care. Respondents added this was largely driven by fragmented communication and care and a lack of information sharing, and that contradictory information was confusing for the person with long term conditions

A respondent quote which illustrates the points raised is presented below.

“People may be juggling complex medication routines, conflicting advice from different services or appointments that are hard to coordinate, as well as inconsistent approaches. This can lead to confusion, frustration, and burnout. Health literacy also plays a role. If someone does not fully understand their treatment plan or what is expected of them, they are less likely to follow it.” British Psychological Society

Theme 3: Financial burden for people with long term conditions

Some respondents, particularly individuals, mentioned managing one or more long term conditions has caused financial worry, strain, and hardship for them personally (and for their families).

There was reference that people with long term conditions have higher living costs than those without such conditions. These responses mentioned the increased costs for people managing one or more long term conditions associated with:

• travelling to and from multiple medical appointments and for treatment
• the purchase of assistive equipment and devices and mobility aids
• the cost of making adjustments in the home
• making changes to dietary requirements
• increased energy bills

Some individual respondents reported a negative impact on their employment. They intimated financial hardship and strain caused by having to take unpaid leave, changes to their shift patterns, reducing their working hours or giving up work altogether as result of managing long term conditions. These individuals often mentioned a worsening in their long term conditions or that they had fluctuating symptoms which they found difficult to manage. Some individuals felt their employer could have done more to make reasonable adjustments in the workplace or to provide additional in-work support.

Other individual respondents mentioned the role of family members that supported their care, with some saying that family members had to change their working hours or give up work to help them in their caring role.

Taking on this unpaid carer role was said to have added further financial strain and hardship for the person with long term conditions, their carer, and the wider family unit.

A small number of individual respondents also reported difficulties accessing the right benefits and financial support or completing paperwork.

The challenges for healthcare providers and the healthcare system

Themes which emerged from consultation responses included:

• theme 1: fragmented care and support
• theme 2: information and data sharing challenges

Theme 1: Fragmented care and support

A majority of individual and organisation respondents said that the provision of healthcare and specialist support could be fragmented, and siloed working was a common feature.

They added that this created challenges for people managing one or more long term conditions, especially where they have various healthcare professionals involved in their care, as well as challenges for service providers in ensuring the provision of effective person-centred care and support for people with comorbidity.

As noted earlier in this section, respondents said fragmented care and support resulted in a range of challenges around, for example:

• ensuring effective communication between service providers, and between service providers and people managing one or more long term conditions
• minimising the number of appointments, assessments and tests people with long term conditions needed to attend when they have multiple professionals/ service providers involved in their care
• treatment complexity
• ensuring the provision of person-centred or whole-person support
• ensuring the provision of coordinated care and support

Respondent quotes which illustrate the points raised are presented below.

“Services operate in unhelpful silos. There is rarely a truly effective multi-disciplinary approach resulting in delayed diagnosis of correlating conditions or extra disease manifestations which aren't picked up and are undertreated causing suffering, debilitation, crisis management and invasive and expensive interventions later on.” Individual respondent

“Managing these challenges requires a holistic, person-centred approach – one that integrates clinical care with emotional, social, and peer-based support.” Resuscitation Council UK

Theme 2: Information and data sharing challenges

Some individual and organisation respondents highlighted that the lack of information and data sharing, including between primary and secondary care, could create challenges for people managing one or more long term conditions and for those that supported them. These responses mentioned:

• that people with long term conditions often had to repeat their medical history across services, using up limited appointment time, while wanting providers to have an accurate, up-to-date understanding of all their conditions to provide tailored care
• the lack of an integrated or holistic view of the person’s health, conditions, and treatment plans

A respondent quote which illustrates the points raised is presented below.

“The absence of integrated data systems between primary and secondary care can result in duplicated assessments, such as repeated blood tests or consultations. Individuals may be invited to similar checks by different healthcare professionals, which not only wastes resources but also contributes to unnecessary physical interventions and emotional strain.” Shetland Health and Social Care